Sunday, December 12, 2010

Day by Day

Two weeks ago, I had to be at clinic to receive IVIG and I started feeling the side effects about a 1/4 of the way into the infusion. It was a complete mess. I felt so frustrated. I was sitting in the glass room, crying, uncomfortable, drowsy, and vomiting. I wanted to be anywhere else than sitting in the purple recliner, hooked up to an IV, and feeling poorly. Last December, during transplant, I was in survival mode, and I pushed through the nausea and the pain. I told myself that I had to get through it and then it would be behind me for good.

Each time I find myself being treated at the hospital, whether it's an infusion, a shot, or a meeting with the doctors I feel angry. I resent that I have to sit in the room, feeling sick and everyone completely invading my business. I struggle with the fact that to this day, I am still dealing with the pain when I thought it would be long gone.

They stopped the infusion for about 10 minutes and decided it would be best to try it again. The doctor came into my room and said, "Okay, we will try it again, and then if you get nauseous, we will stop." She walked out of the room and I finally got the nerve to say what was on my mind. "I am sick of tired of being the test rat in this trial and error process." The doctors are so compassionate and I know it is there job, but when they say things like "Let's try it and we will deal with the side effects.", my heart aches. I love them and respect them, but honestly, I am the one who get nauseous and gets headaches. I am the one who has to deal with it. Sometimes the doctors are the ones who have to deal with my anger when they don't deserve it. (So, if you're my physician, I am sorry.) But I can't exactly yell at MDS.

In the beginning (March of 2009) I wanted to know every possible option and scenario. I would play the "what if" game…"What if my counts did this, would I need this? But what if my liver did this? Would I have to go through this?" At this point I am on a need to know basis. Have you ever heard the saying "ignorance is bliss"?

But, let's get to the good part...I was invited to the "Red Ornament Event" for Phoenix Children's. The hospitals largest donors would be there to watch as they lit the new building for the first time, performance by an 8 year old gospel singer, Rhema Marvanne, and a designer Christmas tree showcase. However; on Wednesday I was contacted by a publicist at Phoenix Children's, the guest speaker could no longer attend and they were hoping I could fill in. They asked if I could share my story, my Christmas traditions, and light the tower. The event was held outside and I was honored to be invited to speak. It was truly a blessing to be a part of it. I got a sneak peak inside the new hospital (before the doctors and nurses..na na na na na na), the Waltons of Walmart introduced me, and I got to thank the people who had funded the hospital that is such a big part of my life. They even asked me to flip the giant switch to turn the lights on the new 11 story hospital. On Friday night, you would have never known I had been so sick just three days earlier. I was wearing make-up, I was walking around(in heels), practicing my speech, laughing, smiling, and feeling so blessed. It was one of those nights that I couldn't stopping smiling. I was in awe of what this life had to offer. I had to really embraced the moment and the blessings that God has set in front of me. I looked back at all of the pain and the struggle to realize it was worth it all.

Part of my speech included flickering the lights on the Christmas tree in an attempt to get the patients who were currently hospitalized attention. It made me realize how far I'd come. In one year, I went from the girl in the hospital bed to the girl on stage lighting up a hospital that would change peoples lives forever; just like the old PCH has changed mine. I realized that I am a part of something much bigger than me.

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10 comments:

(((((Cecil))))) Hang in there kiddo, your attitude is inspiring! I came across your post through the 'we feel fine' augmented reality layer on the Layar Android app on my phone. Random, I know. Check out wefeelfine.org if you're curious. Anyway my wife has Lupus and has to take medicine that makes her feel sick every week. It's tough, but keeping a positive attitude is EVERYTHING so keep your chin up & I hope you have a wonderful winter holiday!

What a great blog. I was so glad I was there to hear the speech (if I might add given like a pro) the whole ceremony was very touching. Your back porch is getting cozy.. It is going to be a great place for your friends and family to come and because it is outside in the fresh air you can be as involved as you feel like it. I ran across this the other day, in one of granpa's books. "He came to pay a debt he didn't owe because we owed a debt we couldn't pay" Love you,Gammie

Oh, Ceci! You have no idea how many times I just tear up throughout the days, thinking about you, and all that you have to go through...the nausea, the headaches, etc. I hurt so unbelievably bad for you, and yet I know, that what I feel is not even an inkling of what you feel. Like you said, YOU are the one feeling nauseous and having horrible headaches. Not us, not the doctors. So the fact that you can look back 3 days later and realize that it is worth it, that you are blessed, that there is a greater purpose, is so incredibly amazing and inspiring to me. It's easy for us to say "Keep Climbing, Ceci", but when you're the one that's actually doing the climbing, it's so much harder. I admire you so much for 'The Climb' you've already made, and I pray for you all the time as you continue 'The Climb' you're on now. You were the perfect person to speak at the "Red Ornament Event." You understand what those kids are going through, you know how important it is to have a good facility to treat patients, and I'm sure all the donors that were there were so proud to give money to a cause that would help people as amazing as you are. I would have loved to have heard your speech. I was told you did a wonderful job! Thank you so much for sharing with us, and letting us be a part of the good and the bad. I love you soooo much! Jena Belle

Wow, Ceci......you never cease to amaze me with your grace and strength. I know you have such hard days, but you bounce back with such beauty and grace and seem to always find a way to look for the purpose in all things. This walk makes no sense, but we know in our core that God has you in his hands and does have a purpose in this. We love you and miss you so much! Next time I want to know BEFORE you are the guest speaker at such a cool event! :) Love you! Heather

Hey Ceci. I have just read your latest entry (been using all my energy lately to move house). I think I understand a lot of your agony - having this chronic, horrid THING hanging over our heads. Grrrrrrr.......

But I am so inspired by your confidence THROUGH the pain. You believe in God, yeah? Me too. Don't know what I would do without Him. He is my strength.

You have such a way with words too, my friend! Thanks for continuing to share your journey. It really helps me to know we're in this together. Luv ang hugs. Jules

I'm so glad you were able to embrace the moment. You allowed God to bless you and then you blessed others. Just think how many lives you touch. God has a big plan for you, Ceci. I think this is just a preview. Much love, Kathy & Rexie

First off I want to say I love you! I can't even imagine what you are going through. I know its tough and its dumb and stupid and it shouldn't even happen to you in the first place, but at the same time I know you are going to get through it and fight your way to end. I know the fight gets harder and harder and you lose motivation but I know you are still trying. Everyday that you lift your head off the pillow and tell yourself you're going to get through the day means you aren't giving up. I don't know how you stay so strong but you do I can see it. I am glad you write blogs like this every once in awhile because I want to know all the feelings you are having. It is ok to have this feeling because just by writing it out shows that you acknowledge it and will work harder to prevent it and stop it. Your amazing far more amazing than words can describe and thats why PCH picked you to flip the switch and give an outstanding speech. I love you and I am here for you always. Give me a call ANY TIME! I love hearing from you. I love you

You continue to amaze me! I am so proud of you! I can only imagine how many lives you have touched and how many people are fighting that much harder because you inspired them to. We are always praying for you and thinking positive thoughts!~Mrs. Bray

You always amaze us. Spending two weeks in Arizona the first of December--welcoming grandchild #10--put me way behind. I was so thrilled to read about your speech and the honors bestowed upon you. Hugs from WA!

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Meet Ceci

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I love chocolate, sitting down with a good book, traveling to new places, relishing a divine meal with good company, putting together an outfit that makes me feel beautiful and strong, pouring my heart out through writing, and my favorite thing to do is spend time with my nephew. I blog about fashion, my travel experiences, things I love, and about my reality as a patient living with a chronic health condition after receiving a life saving stem cell transplant. Because that’s what life is, a crazy jumble of things, both good and bad. This is mine. Thanks for taking the time to stop by.

My Health

I was diagnosed with MDS, a failure of the bone marrow in September in 2009. I'm "climbing" back to good health.Myelodysplastic syndrome is a disease in which the bone marrow does not function normally. Bone marrow is the spongy tissue inside the bones where blood cells are produced. In MDS patients, the production of blood cells is ineffective, in part because blood cells die prematurely in the bone marrow.